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Old 07-03-2006, 06:17 PM   #121
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I am new to this website and just stumbled on this thread. My DS is 13 and dx w/ Asperger's at age 7, even though we knew something was going on by the time he was 2. It has been a LONG road, but I would not change it for anything. Social skills training, OT, speech, reading/language therapy for years and now we are on our own. He is in a mainstream classroom taking advanced classes and doing well. We have the obcessions that have been the same for many years-Yu Gi Oh and Japanese animation. Go figure, all of the fast action and many colors. It's what Asperger's kids like. After reading most of the comments, I could understand all of them except the toileting problems. I was lucky there. Yes, his name start with a "J" too-Jordan. He has taught me more than he will ever know. He is so loving and kind hearted. That is until puberty, now he is getting angry over everything. I am the only one that can talk to him when he looses control. After he calms down, he gives me a hug and apologizes. He is learning, but it is hard. DH and DD don't understand him the way that I do. Because of all the different things I have learned by caring for Jordan, I wanted to help others in our community. We (family) decided to become a medical foster family. This has helped Jordan have a better understanding (visual learning) of other people and the consequences for choices they make. Getting him to not question the parents for those choices can be a difficult task. We thank God for Jordan and the lessons we have learned throughout the past 13 years. I don't know that we would have learned anything without it.
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Old 07-03-2006, 07:17 PM   #122
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Welcome taydansmom!

I agree the lessons we have learned from our little guys are priceless, we are truly blessed. Medical foster family sounds very rewarding . I would love to hear more.
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Old 07-03-2006, 08:01 PM   #123
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Welcome Amy! Let me just say that I feel your pain with the school. DS is on his 3rd school district in 6 years due to being a military family. The amazing thing is that he did preschool in one district, we moved away and then moved back to the district he did preschool in (so I guess, really 4 school districts) and the preschool piece was much easier to get services provided. We have always tried to make it "a team" thing with school and home, but sometimes that doesn't work, like when the principle and one of the spec ed teachers basically tell us that if DS doesn't change, ie get him on meds, then he will have to change schools because he can't function in their school. Mind you this it illegal to even make a veiled threat that you have to medicate your child and that they had just sat through the IEP and told us how bright he is because of how well he did on the Peabody and Woodcock-Johnson. We wanted him to spend less time in regular ed because the problems pretty much stemmed from him getting overstimulated, but they told he was to bright to spend time in self-contained. Yet they complained about what a behavior problem he was becoming. We ended up pulling him and homeschooling, which was good in that he learned in a way that was good for him. When we considered him going back (because we were moving to a new state) we hired an educational attorney to go into the IEP meeting with us. This was after the school failed to give us proper notice of an IEP meeting and held the meeting without us (both BIG no, no's). As I mentioned we are in a new district and the school has been really great at giving DS the things he needs and he's doing really well. Yes, sometimes you get more by making nice, but there are schools that won't give you a thing unless you fight for it. Remember, you are your child's best advocate! Oh, and IMO, the lawyer was worth $250/hr just to see the principle squirm and go through a little of the hell she had put us through!!!
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Old 07-04-2006, 06:33 AM   #124
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Well, yesterday I got appoitments made for all 3 kids to go to the University of Iawa Center for Disabily and Development. They have specialsist that do nothing but evaluate for Autism spectrum disorders. They are also going to get gentic testing. Maybe ther is some link why all my kids seem to be this way.... I am wondering if the baby is going to have some of these issues come up too. We will be going at the end of August!! I hope I can finally find out what is going on with them! I will cross my fingers that Insurance will pay for it. I don't know if it's something they would normally cover and we are also going out of state for it. They are closed for the h oliday so I will have to wait unil tomorrow to find out.
My mom is flying out to meet me and help with the kids during the appoitments. We will have 3 full days of testing! I'm sure I will let you all know how it turns out.
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Old 07-04-2006, 07:03 AM   #125
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Andi, that's great news. I hope you get all the answers you are looking for. I know I felt better after our diagnosis. That's so nice your mom can be there for you, my mom was there for all the testing too.
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Old 07-05-2006, 05:38 AM   #126
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I would also like to encourage everyone to be an advocate for your child. Some principals don't like to go out of their way to help one child if it will cause a change in the way the school is run, so they "forget" to mention district policies. Educate yourself!!! With everything I have learned about our school district, it has has helped me advocate for children in the foster care system (they don't have parents, just state case workers who have no time to learn the school policy, which usually gives the school the upper hand) Check into district based programs that will help you advocate for you child and teach you the system's policy. This is usually a program that is grant funded, so not always available in a "program" form, but it's there. Start with your Exceptional Student Education office at the district level, NOT the school. I could go one forever about this, so let me know if you need more info.

Medical foster care is the best job I could ever have. I get to be a mom and care for those who's parents can't. All of the children that come through our home have medical issues that need special attention. The policy of the program is to move the child once their medical needs are met or stabilized. I don't like that policy much and usually keep the children until they are permanently place in a home. Children are too fragile and don't need to be moved from home to home.
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Old 07-05-2006, 03:26 PM   #127
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My 9 year old son had a lot of trouble in the regular classroom this past year, that environment was too much for him and he became disruptive. So we started the IEP process. The school district did lots of testing and diagnosed him with ASD. Per his IEP, he was in the special ed room all day, except for gym, music, and art. The special ed room was also too stimulating for him and at the beginning of May his IEP was changed so that he was put in the Excel room (only autistic kids). That was a nightmare. The kids in there are MUCH less verbal than Aaron, there was a lot of yelling & screaming by the other kids in there. The school district said that next year they are changing the Excel room structure - there will be 2 rooms, one for grades K-2 the other 3-5 grades, and that this will be a much better environment for him.

We had been to see a pediatrician in our town about Aaron about 9 months ago as we suspected that he had a form of autism. This doctor was supposedly the "expert" in town, and his advice was to look on the internet for information and to start my own support group. Jerk. We were so dissatisfied with that pediatrician, that we went to a pediatrician in Fargo, ND (closest town with more medical services - we are in north central MN). This doctor immediately had blood work done, and MRI, an EEG, a neuropsych evaluation, and an evaluation by a child psychiatrist. So we are in the middle of having lots of testing done. The MRI & EEG were normal. The blood work showed high TSH (thyroid stimulating hormone), so today we were back in Fargo meeting with an endocrinologist who put him on thyroid medication. Last Wednesday were were also in Fargo for a whole day of neuropsych testing - can't wait until we get those results. The neuropsychologist made a comment that although he doesn't have the results of all the testing, he thinks Aaron may be too verbal for a diagnosis of autism.

So now we're really confused. I had been told that the school district is quick to put a child on the autism spectrum because then they get increased funding. Like I said, I'm really anxious for all this testing to be done and to actually have a medical diagnosis. Another thing the neuropsychologist said - he was surprised that Aaron could get special ed services without a medical diagnosis! I had been so impressed with the people at the school district, and it really seemed like everything they were doing was the best thing for Aaron - but now I'm not sure I trust them. I guess I probably trusted them "blindly" because both my parents were teachers, and I naturally thought that all in the education field only have the child's best interest in mind, and I never thought of questioning them. My husband is just the opposite - he doesn't trust any of them (they are somewhat condescending to him - that really sets him off).

All these evaluations and testing are taking so much time - Aaron's appointment with the child psychiatrist isn't until the end of September (although it is likely this will be bumped up when other patients cancel appointments). I will be contacting the neuropsychologist's office in the next day or two to find out results of his testing. I'm trying to hold off on changing my opinion of the school district until we have a definate medical diagnosis.

At times Aaron also has some severe behavioral issues. Themrs - I can totally relate to your story about your 3 year old. Aaron has had some terrible outbursts. And he's getting bigger and more difficult to control.

Nice to hear we're not alone.

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Old 07-05-2006, 06:24 PM   #128
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my next question for all of you...................

when do you find time to stamp?
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Old 07-05-2006, 09:00 PM   #129
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Hi and welcome Barb! I hope you get the answers your looking for. I know in our school district ( I'm in Canada) a child must have a medical diagnois before they apply for services, there is a list of acceptable disorders they can act on. My oldest daughter who has a neurodevelopmental disorder fancy word for ASD has little to no funding from the school board, but yet through our social worker it is an acceptable form of autism for their services and funding. I find this all very frusterating to understand.
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Old 07-05-2006, 09:01 PM   #130
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I find time to stamp when they are engrossed in a movie or activity. I sometimes rent new movies or games to steal an hour here and there.
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Old 07-05-2006, 09:43 PM   #131
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Barb,
I hope you find some answers and your son gets the help he needs.

Stamping? I do it after the kids go to bed or while they're at school/ therapy. That is when I can pull myself away from SCS. I also sign up for swaps once a month or so. That forces me to do it.
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Old 07-05-2006, 10:15 PM   #132
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Quote:
Originally Posted by barbf
My 9 year old son had a lot of trouble in the regular classroom this past year, that environment was too much for him and he became disruptive. So we started the IEP process. The school district did lots of testing and diagnosed him with ASD. Per his IEP, he was in the special ed room all day, except for gym, music, and art. The special ed room was also too stimulating for him and at the beginning of May his IEP was changed so that he was put in the Excel room (only autistic kids). That was a nightmare. The kids in there are MUCH less verbal than Aaron, there was a lot of yelling & screaming by the other kids in there. The school district said that next year they are changing the Excel room structure - there will be 2 rooms, one for grades K-2 the other 3-5 grades, and that this will be a much better environment for him.

We had been to see a pediatrician in our town about Aaron about 9 months ago as we suspected that he had a form of autism. This doctor was supposedly the "expert" in town, and his advice was to look on the internet for information and to start my own support group. Jerk. We were so dissatisfied with that pediatrician, that we went to a pediatrician in Fargo, ND (closest town with more medical services - we are in north central MN). This doctor immediately had blood work done, and MRI, an EEG, a neuropsych evaluation, and an evaluation by a child psychiatrist. So we are in the middle of having lots of testing done. The MRI & EEG were normal. The blood work showed high TSH (thyroid stimulating hormone), so today we were back in Fargo meeting with an endocrinologist who put him on thyroid medication. Last Wednesday were were also in Fargo for a whole day of neuropsych testing - can't wait until we get those results. The neuropsychologist made a comment that although he doesn't have the results of all the testing, he thinks Aaron may be too verbal for a diagnosis of autism.

So now we're really confused. I had been told that the school district is quick to put a child on the autism spectrum because then they get increased funding. Like I said, I'm really anxious for all this testing to be done and to actually have a medical diagnosis. Another thing the neuropsychologist said - he was surprised that Aaron could get special ed services without a medical diagnosis! I had been so impressed with the people at the school district, and it really seemed like everything they were doing was the best thing for Aaron - but now I'm not sure I trust them. I guess I probably trusted them "blindly" because both my parents were teachers, and I naturally thought that all in the education field only have the child's best interest in mind, and I never thought of questioning them. My husband is just the opposite - he doesn't trust any of them (they are somewhat condescending to him - that really sets him off).

All these evaluations and testing are taking so much time - Aaron's appointment with the child psychiatrist isn't until the end of September (although it is likely this will be bumped up when other patients cancel appointments). I will be contacting the neuropsychologist's office in the next day or two to find out results of his testing. I'm trying to hold off on changing my opinion of the school district until we have a definate medical diagnosis.

At times Aaron also has some severe behavioral issues. Themrs - I can totally relate to your story about your 3 year old. Aaron has had some terrible outbursts. And he's getting bigger and more difficult to control.

Nice to hear we're not alone.

Barb
Question - how did the school diagnose him? We've been to several districts and none have had the ability to dx. They all have a school psych, but none has ever attempted to dx. IMO, I would check on that, they maybe be playing a little loose with the rules and trying to force you into something because you were "blindly" trusting them. Also, being verbal doesn't rule out autism. DS is very verbal and has AS/HFA. Most kids on the high end that I've dealt with are extremely verbal.

Anyway, good luck with the rest of the testing and the school!

On a happy note for us. DS's skills trainer has been out of town for the last week and was supposed to be back today. He had a sub last week and it went pretty well. Last time he had a sub trainer he spent most of the day in the quiet room being upset. Today when he went to school the skills trainer wasn't there, cell phone started buzzing (he had called last night) voice mail, he was stuck in LA with plane problems. They tried to get a sub, but couldn't. DS made it through the day okay, not great, but not bad This is a major step up from 6 months ago. I'm so proud that he even wanted to try and stay at school without his trainer!
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Old 07-06-2006, 03:45 PM   #133
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Kristen - the school district had us fill out a number of questionnaires about his development, behavior, etc. We met with a social worker from the school. Aaron had many different tests by the school district, I guess I don't know what they were, but I know they tested his senses in depth because they were able to tell that his auditory learning is exceptional. He was observed by the district's autism specialist, a school psychologist, and others. The child psychiatrist he will be seeing has sent me release forms for his school records, and the neuropsychologist has copies of his school district testing results & his IEP.

Found out today that we will get the results of his neuropsych evluation on August 3rd - that requires another trip to Fargo - 3 hours each way. Good thing there are some craft stores there I can visit!

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Old 07-06-2006, 04:38 PM   #134
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Hi everyone,
I hope I can be part of your group. Although I do not have an autistic child I do teach autistic children. They are 5-8 years old. It is with our public school system. Autistic children are beautiful and funny and eveyday I go to work is a joy. Of course there are hard days as well, like some of you said, their sleeping pattern is off sometimes or they don't feel well and can't tell you. We do alot of discrete trial with some children while others have been mainstreamed into classes for gym, art, music, etc. Also alot of sensory. I love these guys like they were my own, When they move onto another class I ask them, "Where are we going to meet? And they say" Heaven". I know that we'll have alsot to talk about when we meet again. If I could help in anyway, or questions please feel free to ask. Mea
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Old 07-06-2006, 06:55 PM   #135
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Hi and welcome raven! Quick question my daughters aide has been with her since K and is now going in to grade 4 she plans on being with her until grade 8 when she enters high school is this common? I love it but I was wandering if it is common.
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Old 07-07-2006, 07:45 AM   #136
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Thanks for the welcome. The aides in our school district do not usually go along with the children as they move into different class rooms. I understand the kids do get attached and comfortable with thier aides and teachers and it's such a change for them. We usually have the children for 2 years and it's hard for us to let them go as well, but they move on and we let them fly. At the end of our school year in June we will take the children moving to a new school and environment to their new school and introduce them to their new teachers and let them see the new classroom. For some autistic children change and transition is such a problem, but they do seem to adjust in time. Some aides have stayed with high functioning children as a shadow in the classroom just to be there if they need help or get overwhelmed. I hope this has helped. Mea
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Old 07-07-2006, 08:09 AM   #137
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I have learned in the last 24 hours we are truly blessed, I called another school district in our province, we were thinking of moving back to where we grew up, as my mom our only support system is moving away at the end of the month, and my hubbys family and our friends are all in Langley where we grew up. Like I said earlier we get speech, some OT, RDI, adapted swimming, life skills, and a fulltime aide here. Megan is intergrated with her class, but still spends a good percentage of her day in the LRT room, getting one on one with her aide for math and reading.
When I phoned the Langley district and asked what services would be available I was appauled at what they told me. NO CHILD has a fulltime aide especially in gr.4 regardless of diagnois, No swimming of any kind, No life skills, limited speech, No RDI, no OT, and I love love this,even if she had a shared aide,I was told OUR AIDES DO NOT TEACH, that is the teacher's job, if your child doesn't get it too bad. Langley is a major center here they have about 100 children with autism in there district, what are they doing with these kids! I live in the same province with the same funding from the government, our school receives no more money then their schools, so why such a difference?
Thanks for letting me rant. I feel like I need to do something but don't know what. I am very put off by all this. I will not be moving anytime soon.
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Old 07-07-2006, 03:18 PM   #138
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Kelly - that's so awful. We don't get much funding over here at all - we do have some autistic units attached to other special needs schools, but they are few and far between. Joshua doesn't even have a statement as he's not considered severe enough! I have to fight for everything I get for him and it does make me mad! It's almost like autism is not an acceptable diagnosis - you have to have something people can see before you get any help!

Gosh, as you can tell I'm having a rant day today - hope the weekend will be better, only 2 more weeks until the end of term!

Hope everyone is doing OK, going to bed now as its late, hope to have some time to create this weekend!
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Old 07-07-2006, 06:19 PM   #139
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Kelly,
Your girls are lucky to have you working so hard to find them what they need. Sorry you didn't get better news from the other school district. I know some kids have 1:1 aides here, but I don't think they usually follow the kids for more than a couple of years. Caleb's class has 1 teacher, 3 aides and no more tham 6 kids at a time. Good luck with this transition.
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Old 07-08-2006, 09:53 PM   #140
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Hello All

I am actually a school psychologist in CA and LOVE my job. I actually am the psychologist that works with children on the autism spectrum prek-6th grade. I work very closely with the families and truly respect them AND their children.

I just spent the last 45 minutes reading every post in this thread and I just want you to know that I sooooo appreciate parents like all of you. Being a parent is challenging but being a parent of any child with different needs can be hard but so rewarding.

Someone had asked about the school district making a diagnosis vs physician. This is soooo confusing for parents as it does not seem real streamlined. My job as a school psychologist is to determine if a child qualifies for services based on educational code criteria...I do not look at the DSM criteria at all. I am in CA and the law dictates that my job is to look at the ed code and determine eligibility based strictly on ed code. Many many times, I may be the first person that sees a child at 2 1/2 and identifies them as mtg "ed code criteria for autistic like behaviors". At this point, they are placed on an IEp and INDIVIDUAL (yes...that is my pet peeve...too many "program IEP's and goals out there") goals and objectives are written. Once I determine this, I always recommned that the parents obtain a medical evaluation. What becomes confusing is that I have had cases in which the child meets ed code criteria for autistic like behaviors but does not meet DSM/medical criteria for autism. Ed code criteria is much "looser" than the DSM criteria.

Not sure if this makes sense. I actually just did an inservice for school psychologists in the area as it is confusing for everyone. As the numbers of children with autism increases, currently 1 in 165 births, we all need to make sure that we do as much as we can for these children.

I hope this answered the mother's question re: education vs medical as I always try to explain the difference and for a parent, all you want is to understand what is happening and for your child to have the services they need.

As to the parent that was expressing concern about moving to a new district who was not offering services. Just remember that your child is an "individual" and the IEP team needs to consider the needs for your individual child. Schools often have programs and procedures that may meet 99.9% of the students needs as they are written, the goal of the IEP team is to provide the supports necessary to make the child listed on the IEP successful...this is why goals and objectives are SOOOO important. The goals and objectives guide the service delivery and then the IEP team must discuss supports necessary to meet those goals.

Ok..as you can tell, I am passionate about this topic and have been to over 350 hours of training just on autism, not to mention working it with it everyday. I believe that if the district and parents are both advocates for kids, we may have disagreements at times but in the end it always finds a way of working out. Parents should always walk away feeling like they were heard and that they were respected afterall, they know the child the best!

Great thread to discuss great kids!!!!!
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Old 07-08-2006, 10:53 PM   #141
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Hi psychkim! Thanks for the info in dealing with a new district we do have an IEP but would it hold up in a new district? I will try contacting her again to discuss the outline of our current IEP.
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Old 07-09-2006, 08:55 AM   #142
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Psychkim,
Thanks for your insights. Glad to have you.
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Old 07-09-2006, 02:48 PM   #143
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my next question for all of you...................

when do you find time to stamp?
I have a 4 year old with Autism and an 18month old with Deveolpment Delay. And I know the feeling of finding time.. We have so many doctors appt and therapy appts it's crazy. We leave the house everyday of the week for something.

I usually stamp at night when everyone is in bed..for a few hours.. Or on the weekend. when my husband is home he will be in charge while a get some time to myself.
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Old 07-09-2006, 07:48 PM   #144
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Stampingholly,

I love your signature line. And I agree I tell my family I'm not a SAHM, I'm a stay in the van mom. Always on our way somewhere or running late for something.
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Old 07-09-2006, 08:15 PM   #145
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Stampingholly,

I love your signature line. And I agree I tell my family I'm not a SAHM, I'm a stay in the van mom. Always on our way somewhere or running late for something.
I love that.. a stay in the Van mom.. How true is that.. My mother was here visting me for a few weeks and she was like no wonder you are never home when anyone calls you.. She couldn't belive for one minute the amount of appts we have.. I told them at therapy I want my own parking spot since I'm there 4 days a week..lol.

Oh thanks about my signature line.. I love it too..
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Old 07-09-2006, 08:53 PM   #146
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Hi and Welcome stampingholly!
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Old 07-09-2006, 09:58 PM   #147
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Thanks for letting me discuss things with you all...great site and great people
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Old 07-10-2006, 01:48 PM   #148
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Hi guys how are you all doing? Have you all finished for the summer holidays now? We still have 2 weeks to go and boy are they going slow! I have just finished writing my reports on all my students and next week is activity week at school. The kids are so excited its becoming unbearable!
We had a good week last week until Friday! J is in year 2 at school (your year 1) and apparently he smelled smoke and alerted the teacher. The school was evacuated and J was the hero of the hour ( a faulty light apparently!) well I picked him up and he was a bit jumpy, but by the evening OMW he was all over the place, he ended up sleeping in with me and this morning before I took him to the childminder he was insistant that the school had burnt down so we had to drive that way. 'Cos he's bright he's able to work out worse case scenario and I spent all my time telling him it was OK! School was great when I contacted them - they spoke to him and showed him what had gone wrong and that they'd removed it all away, so now he seems to be OK. BTW its his birthday this week, he hates surprises and thats also causing him to freak out! I shall be glad to have him at home!
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Old 07-10-2006, 03:31 PM   #149
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Hi Fiona, our summer break here in Canada just started our kids don't go back until September the 5th they got on June 29th such a long haul for my girls, bordem sets in at about week 2-3. We try to keep busy by camping and stuff but as you all well know, different activities don't always go well. I wish there were some summer programs most things around here take the summer off. It get so hot here too where outside become unbearable today is not too bad it is only 31C or 88F, we go all the way up to 38-42C or 100-107F for the month of august, then comes fire season so scary. Hope this week is finding you all having a great time.
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Old 07-10-2006, 03:33 PM   #150
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PS way to go J!

Nice job with alerting the teacher.
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Old 07-10-2006, 09:52 PM   #151
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Caleb was out of school the whole month of June. He got a little restless around week 2, but he got in the groove of things later. Now he's in summer school in a new program. He loves it. They are so in tune with his needs.
Luke's services are year round.

Yeah for J. WHat a little hero he was. Hope everyone is surviving the heat.
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Old 07-11-2006, 09:39 AM   #152
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Originally Posted by emmiestamps
Hi Fiona, our summer break here in Canada just started our kids don't go back until September the 5th they got on June 29th such a long haul for my girls, bordem sets in at about week 2-3. We try to keep busy by camping and stuff but as you all well know, different activities don't always go well. I wish there were some summer programs most things around here take the summer off. It get so hot here too where outside become unbearable today is not too bad it is only 31C or 88F, we go all the way up to 38-42C or 100-107F for the month of august, then comes fire season so scary. Hope this week is finding you all having a great time.

That is so long - we are just organising our mums outings - so far I've found something to do every day for the 6 weeks and we're going to pool resources. Fire season sounds scary - we have very little extreme weather in the UK and moan when we get anything out of the ordinary - at the moment it is hot (well hot for us!) and we don't do airconditioning or anything like that!
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Old 07-11-2006, 09:32 PM   #153
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Hi Fiona, our summer break here in Canada just started our kids don't go back until September the 5th they got on June 29th such a long haul for my girls, bordem sets in at about week 2-3. We try to keep busy by camping and stuff but as you all well know, different activities don't always go well. I wish there were some summer programs most things around here take the summer off. It get so hot here too where outside become unbearable today is not too bad it is only 31C or 88F, we go all the way up to 38-42C or 100-107F for the month of august, then comes fire season so scary. Hope this week is finding you all having a great time.
All the public schools in HI are transitioning to year round school this year, so the kids had a really short summer. They had one week off before summer program started, summer program for 4 weeks and then two weeks until school starts again. Both the kids have been fussing about doing summer school and not having much time off, but the upside is that they have a fall break, 3 weeks at Christmas and 2 weeks in the spring and they won't be home long enough to get bored or for Jacob to get out of rythm with his school schedule!

Now we just need to survive our 2 week vacation to the grandparents!
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Old 07-11-2006, 10:57 PM   #154
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We have a break about every 6 -7 weeks, in the summer we get 6 weeks, then a week in October, 2 at Christmas, 1 in Feb, 2 around Easter, 1 in May and thats our lot!
Today is J's birthday and he's got to go to school - not happy as he wants to play with his pressies - I did try and tell him that opening stuff was to be this afternoon - but he wasn't having it! Oh well, off to school now!
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Old 07-12-2006, 01:06 AM   #155
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My 9 year old son had a lot of trouble in the regular classroom this past year, that environment was too much for him and he became disruptive. So we started the IEP process. The school district did lots of testing and diagnosed him with ASD. Per his IEP, he was in the special ed room all day, except for gym, music, and art. The special ed room was also too stimulating for him and at the beginning of May his IEP was changed so that he was put in the Excel room (only autistic kids). That was a nightmare. The kids in there are MUCH less verbal than Aaron, there was a lot of yelling & screaming by the other kids in there. The school district said that next year they are changing the Excel room structure - there will be 2 rooms, one for grades K-2 the other 3-5 grades, and that this will be a much better environment for him.

We had been to see a pediatrician in our town about Aaron about 9 months ago as we suspected that he had a form of autism. This doctor was supposedly the "expert" in town, and his advice was to look on the internet for information and to start my own support group. Jerk. We were so dissatisfied with that pediatrician, that we went to a pediatrician in Fargo, ND (closest town with more medical services - we are in north central MN). This doctor immediately had blood work done, and MRI, an EEG, a neuropsych evaluation, and an evaluation by a child psychiatrist. So we are in the middle of having lots of testing done. The MRI & EEG were normal. The blood work showed high TSH (thyroid stimulating hormone), so today we were back in Fargo meeting with an endocrinologist who put him on thyroid medication. Last Wednesday were were also in Fargo for a whole day of neuropsych testing - can't wait until we get those results. The neuropsychologist made a comment that although he doesn't have the results of all the testing, he thinks Aaron may be too verbal for a diagnosis of autism.

So now we're really confused. I had been told that the school district is quick to put a child on the autism spectrum because then they get increased funding. Like I said, I'm really anxious for all this testing to be done and to actually have a medical diagnosis. Another thing the neuropsychologist said - he was surprised that Aaron could get special ed services without a medical diagnosis! I had been so impressed with the people at the school district, and it really seemed like everything they were doing was the best thing for Aaron - but now I'm not sure I trust them. I guess I probably trusted them "blindly" because both my parents were teachers, and I naturally thought that all in the education field only have the child's best interest in mind, and I never thought of questioning them. My husband is just the opposite - he doesn't trust any of them (they are somewhat condescending to him - that really sets him off).

All these evaluations and testing are taking so much time - Aaron's appointment with the child psychiatrist isn't until the end of September (although it is likely this will be bumped up when other patients cancel appointments). I will be contacting the neuropsychologist's office in the next day or two to find out results of his testing. I'm trying to hold off on changing my opinion of the school district until we have a definate medical diagnosis.

At times Aaron also has some severe behavioral issues. Themrs - I can totally relate to your story about your 3 year old. Aaron has had some terrible outbursts. And he's getting bigger and more difficult to control.

Nice to hear we're not alone.

Barb
Hi Barb,

I'm kind of confused as to how the school can label a child with ASD when it is a medical diagnosis. As a special education teacher for the last 15 years, I can guarantee you that if your son were in my school he would not be labeled as having ASD without the medical diagnosis. It really bothers me that some people can be so unprofessional and not follow procedures that are specifically laid out in the law and not get into trouble for it. The common theme that I've read in these posts about becoming your child's advocate is true. You need to educate yourself on the law and then armed with this information along with the test results from every specialist you've seen meet with the school and discuss your child's needs. The school cannot say they don't have a program to meet your child's needs due to funding, etc. This is against the law. If the school fails to meet your child's needs, go through the due process procedure with all of your data in hand. The biggest reason schools lose due process hearings is because they do not have the data necessary to prove their position. Here in Hawaii, we have several private schools where children with ASD receive services at the Department of Education's expense because of the lack of appropriate services at the child's home school.

I wish you good luck with all the evaluations.

Becky
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Old 07-12-2006, 01:23 AM   #156
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Welcome Tracy! Thank you for sharing with us, we too had a long wait for fully potty trained she was also just going into kindergarten. Megan started speaking when she was 5 she had about 4 words at the time but know at 9 she talks alot they lost count after 5000 words yeah Megan! I felt the transition from kindergarten to grade one was good she also was busy the other half of her kindergarten year doing EIBI in the morning and school in the afternoon, so grade one just came naturally as she was used to being busy all day. Our problem are in the summer when most things shut down, she gets bored and sometimes behavioral problems will set in. I wonder too how many people are affected by autism, parents, grandparents, aunts, uncle cousins, siblings and friends.
Hi Emmiestamps,

In reading your post as a special education teacher I have to ask the following? Does your daughter's school not provide extended school year services? If not, they are not in compliance with IDEA 2004 as extended school year services are necessary for some students who would show issues in regression (losing skills taught) and recoupment (regaining those skills) during the summer break. Here in Hawaii we offer ESY services to all students who qualify. The other services are scaled back, but still offered. Our ESY day is four hours and related service providers come in as needed based on the child's IEP.

Becky
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Old 07-12-2006, 06:49 AM   #157
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Hi Emmiestamps,

In reading your post as a special education teacher I have to ask the following? Does your daughter's school not provide extended school year services? If not, they are not in compliance with IDEA 2004 as extended school year services are necessary for some students who would show issues in regression (losing skills taught) and recoupment (regaining those skills) during the summer break. Here in Hawaii we offer ESY services to all students who qualify. The other services are scaled back, but still offered. Our ESY day is four hours and related service providers come in as needed based on the child's IEP.

Becky
We are in Canada and so far we don't have any school programs that extend into the summer. All of her speech, lifeskills and RDI are done with the school so they end with the school year. We can put her in swimming lessons, but that's only for 2 weeks for a 1/2 a day. Other then that there is music therapy but the waiting list is soooo long. I would be really nice if we had a program like ESY, I think she would really bennifit from it.

As for holidays for the rest of the year we also get 2-3 weeks at Christmas depending how it falls, 2 weeks in the spring, one week at Easter, and every long weekend has a pro D day attached to it.
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Old 07-12-2006, 06:51 AM   #158
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Hi and Welcome Becky!!
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Old 07-12-2006, 01:33 PM   #159
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We are in Canada and so far we don't have any school programs that extend into the summer. All of her speech, lifeskills and RDI are done with the school so they end with the school year. We can put her in swimming lessons, but that's only for 2 weeks for a 1/2 a day. Other then that there is music therapy but the waiting list is soooo long. I would be really nice if we had a program like ESY, I think she would really bennifit from it.

As for holidays for the rest of the year we also get 2-3 weeks at Christmas depending how it falls, 2 weeks in the spring, one week at Easter, and every long weekend has a pro D day attached to it.
Hi Kelly,

Ah, Canada deals with their special needs population differently I guess. What does your federal law state about serving this population in the schools?

Becky
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Old 07-12-2006, 01:59 PM   #160
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Good question I will go look up some info and try to find out.
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